November 25th 2009

Jared's surgery was delayed. It was rescheduled for today, but the antibiotics they gave him for the UTI gave him CDIFF....again. Surgery has been rescheduled for November 30th.

My visit with Jared was wonderful. I was so amazed when I walked into his room for the first time. He was wiggling around in bed, his movements were so much stronger and faster. He turned his head an looked at us as we walked into the room. He embarrassed each of us as we leaned in for hugs. Jared kept trying to speak but none of us could understand what he was saying. After several guesses we gave Jared a pen and paper. At first he was trying to write at the top of the paper but was missing it completely, he has severe double vision from the brain damage. When we finally adjusted the paper under his pen he began to write. We all sat there silently as we watched him write "I love", in unison we read the words then sat in silence for a few moments. Finally I broke the silence asking Jared "Who do you love?". Secretly hoping he remembered how to write my name I watched him lift the tip of the pen and point to his mother's hand.

Jared focused most of his attention on his mother, taking her hand and kissing it, staring at her as if she seemed familiar, and reaching out for her.

It was late so we only spent a few minutes with him before checking into our own room. My heart ached after I left the hospital. I couldn't help but to wonder if Jared remembered me at all. Sometimes brain damage erases years of memory, what if I had been erased? Tears burned my eyes as I tried to push those thoughts away. I live on those memories every single day, they push me when I feel like giving up. They make me smile when I feel like crying and they soften my heart when it hardens with frustration. How could Jared live without those memories? Those memories were our life, our love, and our happiness. How could we be

I laid in bed and squeezed my eyes shut. I wanted to pray but I had no idea what to say to God, I thought about it for a while and asked God for a dream. I laid there praying over and over asking God to send me a wonderful dream about Jared, until I finally fell asleep.

I woke up the next morning (Thursday 11-12-09) sore from the ride and excited to see Jared participate in his therapies. We had a busy day rolling Jared from one therapy to the next. I talked to Dr. Mac about the surgery and the delays. I asked him if Jared could come home for Christmas, he didn't say no, he told me didn't think it would be good for Jared. After they place the Baclofen pump it will take up to a month to adjust the dosage correctly, riding in a plane can mess with the pump's settings. I also wouldn't want to risk having something go wrong with it, we don't have a doctor here familiar with Jared's condition. I also thought Jared may still be sore from surgery and traveling may cause him pain. Considering all those things I decided not to bring Jared home for the holidays.

Jared's therapist's were excited to show me what Jared could do. In speech therapy he was able to mimic noises. He was also able to say my name. Mrs. M showed me the computer Jared has been working with. It has a touch screen and Mrs. M asks Jared to pick out certain objects on the screen. Jared made a good effort but his double vision makes him push the wrong objects sometimes. I was also able to watch him eat ice. I was amazed at how well he was functioning.

Next we went to physical therapy. Mrs. S showed me that Jared was able to pull himself into a sitting position and sit for a few minutes unassisted. Jared was also able to kick his right leg up and forward. I watched as Mrs. S held her hand up beside her, she instructed Jared to kick her hand, after several tries he finally did. Last was the grand finally, Mrs. S was especially proud of this accomplishment. She instructed Jared to move his left foot, he pulled his foot up several times! It was only a slight movement, but he did it. Jared was also able to hold his left leg up off the mat, usually he lets if fall to the side when he's laying on his back. I thought I was going to burst with excitement, I hadn't seen Jared move his left leg/foot like that since the accident. This gives us hope that the surgery will help him regain more function. Maybe one day he will be able to stand or walk.

At lunch Jared was able to communicate which foods he wanted to eat with gestures. He was able to feed himself, drink, and lick food from his lips. He even picked the table we sat at, apparently I picked the wrong one and he let me know about it.
We played a game in recreational therapy. He answered true or false trivia questions with head nods. Some of the answers were wrong but was able to participate. He said the word "yellow" to choose his game piece rather than pointing.

As the day progressed Jared began interacting with me more. He seemed to enjoy my hugs and he kissed me several times. He suggested that my shirt was cut too low (it wasn't!) by trying to pull my shirt up to cover my chest.

That afternoon I was so tired, after Jared's therapies we took a nap. I pushed Jared' s wheelchair next to his bed and climbed in. I laid there with my lower body in Jared's bed and my upper body cradled in Jared's arms. This was the moment I had driven two days to have, it was completely worth it.

After dinner they put Jared into bed. We laid in bed watching TV for a while. I was so happy to be back in Jared's arms. I used to tell him that his arms were my favorite place, I fit perfectly.

Friday (11-13-09) we repeated the same therapies. I spoke with the nutritionist, she wanted to put Jared back on some of the tube feedings. They switched his diet a step up from pureed foods to mechanical soft. Jared was having a hard time chewing the meats and wasn't getting enough protein. I asked her to let me try a few things before she ordered more tube feedings, she agreed to give him a few more days.

The day drug buy so slowly, all I wanted to do was lay in bed with Jared holding me.
That night I laid in bed talking with Jared. I told him I loved him and asked him if he remembered me, he nodded yes. I asked if he remembered Tyson and Catlin, again he nodded yes. He also claimed to remember the accident with another head nod. Jared and I wound up in a mini make out session before I tore myself away so he could get some sleep.

Saturday (11-14-09) I woke up with a mission to get more protein in Jared. I brain stormed and did some google searches trying to figure out things I could make or buy for him. I wished I could cook him his favorite foods, I pictured how our family dinners would be when he was finally able to come home. While I was on the computer I remembered had an account at I logged him in and played the Temptations station. Jared's mother teared as we sat there singing "My Girl". Jared's lips moved with the words of the song, no noise came out as he sat there bobbing his head, drumming his fingers, and singing my girl to the end. As the song finished I sat there remembering the video he sent me while he was deployed. I watch this video all the time, sometimes it makes me smile, sometimes it makes me cry. Jared didn't know how much I would cherish this silly video when he sent it to me as a joke.

Saturday afternoon I went shopping for Jared. I bought him some Muscle Milk to make protein shakes with. I also bought several other things packed with protein so he would have some alternatives if he wasn't able to eat what they were feeding him.

That night I laid in Jared's bed, it was so hard to hold back the tears as I told him I would be leaving the next morning. He fell asleep while I was kissing him softly on his neck and whispering in his ear, "You are perfect, God made you just for me." "I will love you forever, I can't help it, I never could." "You are mine forever and I always be here taking care of you.".

I tried to ease out of his bed several times. Each time I pulled away Jared woke up and pulled me back to him, he would lean forward and give me a passionate open mouth kiss. He held me tight until he drifted back to sleep, waking as again as I tried to leave.

I can't find the words to describe the pain I felt as I left the hospital that night. It gets harder each time I say goodbye.

November 24th was our second anniversary. Two years ago I married Jared, I kissed him goodbye soon after and waited for him to return from war. I remember telling him how much I loved him, I told him that no matter what he was coming home to me. I told him I wanted him no matter what happened that I would always love him. I said to him "Dead, alive, legless, or brain damaged...your coming home to me. I will take care of you, you belong to me now."

Jared came home to me, alive and completely healthy. He flew into the US on our one year anniversary. We were finally able to start our lives together.

Now our second anniversary has come, again I am waiting for Jared's return.

November 9. 2009

The social worker from the hospital called me today. She said Jared has another UTI and has been taking antibiotics for the last 4 or 5 days. Jared's surgery may be delayed. They are going to run some more blood tests, if the infection is cleared up the surgery will be on November 13th if the test shows he still has the infection then they will reschedule.
The nurse also told me that Jared's tube feedings were discontinued today. Jared eats enough to sustain his own life now! They will still use the PEG tube to give him water and medicine until he can drink thin liquids.
It's hard to imagine that only a few months ago doctors were telling me he might not survive and if he did that he probably wouldn't wake up from his coma.
It's so amazing to watch God's work...

November 5, 2009

I talked to Jared's speech therapist yesterday, she had so many wonderful things to say about Jared.

We talked about goals before I left Virginia. I told her my goals were communication and eating. She has been working very hard on both.

She said when she approached the doctors about feeding Jared her goal was "pleasure feedings" to satisfy my desire to feed Jared. Jared has completely surpassed her goal.

She said Jared was doing very well, eating 75 to 90% of his meals. He is even able to feed himself. She also said Jared was able to eat a banana, he chewed and swallowed with no problems.

She has hope that Jared will be able to eat enough that the feeding tube can one day be removed. Eventually Jared should be able to have a normal diet.

Jared's communication has also improved. 90% of the time Jared answers yes and no questions correctly. "Mrs. M" the speech therapist told me a few days ago Jared was able to write his name.

She also told me that he rolled himself to the nurses station and tried to sign himself out of the unit (all patients have to sign out before they leave). She told him if he was signing himself out that he had to write the time he was leaving. She told him the time was 15:oo and he wrote 1500 on the paper.

The nurses tell me Jared communicates well with them. He lets them know when he's tired or in pain. He tells them if he is ready for bed and is able to get their attention. Usually he communicates with gestures, sometimes he is able to whisper.

Yesterday I had to drive to Little Rock for some paper work. I had some extra time so I stopped by the trauma hospital. I spoke with a few people who cared for Jared, I also spoke to the nurse manager from the ICU. I gave them an update and explained that Jared had only needed a shunt. She was so happy to hear Jared was getting better and was completely shocked that all he needed was a shunt.

I haven't been holding up as well as I should be. I've been really stressed lately and a little depressed. I do good for a while and then it hits me. I guess we all have our breaking points and I'm sure I'll feel much better after I see Jared. He always makes me feel better.


August 17, 2009 I was so tired. I didn't sleep at all the night before, I was so worried about everything. I spent the night forcing all of our belongings into the two suitcases we were allowed to bring.

I had to have Jared dressed and ready to go by 7am. Our time in the Little Rock VA had been so stressful, they were short staffed most of the time and seemed to be unfamiliar with Jared's condition. On this particular morning I had a disagreement with Jared's nurse, she didn't want to dress the bed sore on Jared's tail bone before the flight. I wound up doing it myself.
An ambulance picked us up and drove us to the airport. They loaded Jared into a tiny plane and strapped him down. Jared was very alert during the flight, he even seemed to enjoy it. He kept reaching up and touching the wall of the plane and throwing the objects we handed him to hold.

When we landed in Virginia another ambulance was waiting for us, we drove 30 minutes to Hunter Holmes McGuire VA Medical Center. There were several people standing outside the emergency room as we unloaded Jared. I giggled to myself when I realized what they must have been thinking as I unloaded both suitcases from the back of the ambulance.

They wheeled us up to the polytrauma unit and settled Jared into bed. I was finally able to meet Dr. G, the man that was finally going to help Jared.

Dr. G had so many questions, I answered as many of them as I could before I burst into tears. Unable to speak I dug into my bag for a picture of Jared and haded it to Dr. G. I said "This is my husband, it hurts so much to look at him like this. I can handle the brain injury and coma, I can't handle seeing his body in this condition." referring to the 50 pounds he had lost and the bed sores on his spine and tailbone.

I went outside and called our family members to give them an update. Emotionally drained I dragged myself back up stairs. I dried a few tears and leaned down and gave Jared a hug. He reached up and hugged me back, patting me on the shoulder. Jared had never shown me affection like this since the accident, it was like he knew how hard I had fought for him and he was thanking me.

Jared knew who I was and he loved me. I will cherish that hug forever.

With Dr. Mac in charge and Dr. G following we came up with a game plan. The MRI showed Jared's ventricles were slightly enlarged. It could have been caused by shrinkage of the brain after it was injured, or it could be normal pressure hydrocephalus. Hydrocephalus is caused by over production of cerebral spinal fluid or under absorption. Either way it causes pressure to build in the fluid around Jared's brain, enlarging the ventricles.

The doctors decided to try some nuro stimulating drugs and suggested that we do a lumbar puncture to test Jared's intracranial brain pressure. They would also remove 30 to 50cc of fluid and watch for any improvements.

Jared also began daily therapies. Five days a week Jared attended physical, speech, occupational, recreational, and kinesiotherapy.

August 24, 2009 the lumbar puncture was done. Jared's pressure was slightly elevated. The following day Jared showed a significant improvement. In occupational therapy Jared was able to open a water bottle, attempted to drink from it several times, then replaced the cap. Jared was no longer considered to be in a coma.

33cc of spinal fluid was the only keeping my husband in a coma. Doctors had given up on him and had tried to push me into placing him in a nursing home. They hadn't listened to me when I told them he had regressed after the drain was removed. In my opinion he would have emerged from his coma sooner if they had listened to me and done something to help him. Finally someone had listened to me, with an open mind, and those people were able to help Jared.

I wasn't crazy after all.

Jared had great progress in the following two weeks, eventually pressure began to build and he regressed.

Neurosurgeons and the PM&R doctors agreed Jared needed a shunt. The shunt would be a permanent solution to the problem and would offer the best chance for recovery.

September 15, 2009 neurosurgeons placed a shunt in Jared's brain. Surgery went well and they were even able to use the existing hole where the EVD had been. Jared was a little sick the day after surgery, but continued to improve as the days passed.

September 21, 2009 I left Virginia and went home. The hospital was doing a great job taking care of Jared, there was no real reason for me to be there. I desperately needed to go home and pull our life back together. I had so many things to do and all of our bills were past due. I planned to work and make the changes necessary for Jared to come home.

Since I have been home Jared has made an awesome recovery! He became more active, started following commands more consistently, answering yes or no questions, eating pureed foods, drinking thickened liquids, pushing his wheelchair down the hall, and interacts with people. A few days ago he played Uno with his speech therapist. He's doing so many things. He is able to communicate sometimes with gestures, hand signals, and very whispered words. Last weekend he told me "I love you" for the first time.

Jared is still suffering from weakness on the left side of his body. He can't move it at all. His muscles are contracted and he can't straighten his legs or left arm. Dr. Mac suggested a Baclofen pump. They did a Baclofen trial with good results and Jared is scheduled for surgery November 13th. I plan to leave on November 10th to see Jared.

I'm so excited, I can't wait to see him.

Welcome to the VA!

July 31, 2009 I wheeled Jared over to the VA hospital. Normally they call an ambulance to move patients to the VA hospital across the street. It seemed pointless to me, I put Jared in a wheelchair everyday and pushed him around, why not across the street?
We rolled Jared into the VA emergency room to be admitted, I remember the nurse looking at me, head cocked to one side "Is this Mr. M?". I replied with a simple "yes" and explained that I was his wife and that we had come from the trauma hospital next door. I'll never her next words, "I thought he was in a coma?"
I laughed a little and said "He's in a coma, not dead."
So many people had such a strange impression of comas. I guess in the past coma patients were left in bed and given standard medical care to keep them alive. I guess people just waited for coma patients to wake up. They found it odd that I wanted to get Jared dressed or eat lunch with him in the cafeteria. I remember the way people stared at me when I put his feet in the grass and how nervous his family had been when I rolled him around outside the hospital.
We can't sit around on these coma patients to wake up, we might be waiting forever! I was determined to live our lives and do as many normal things as possible. Who wants to live life when you can't get out of bed?
The VA hospital in Virginia wouldn't have a bed available until August 18th. We would have to stay at the local VA for 3 weeks.
When he was admitted to the local VA they placed him in a step down ICU unit. they hooked him back to all the monitors that we had fought so hard to be free of. There were several beds in the same room with other patients. I wasn't able to sleep in Jared's room, he had to stay the night at a new hospital all alone.
The VA hospital wasn't as nice as the newly renovated trauma hospital. I was really starting to wonder about my choice to move Jared to the VA system. I was scared.
On the second day they moved him to a private room on the cardiac floor for more observation. Eventually they moved him to a regular floor and we waited.
I went home and stayed for a week. Jared's family took turns sitting with him while I was gone. I wanted to spend time with our children and tie up all the loose ends at home. I had planed to stay three months in Virginia and I didn't know if I would be able to fly home for a visit.
While I was home Jared's mother fought with the doctors to remove the cervical collar. It was causing sores on Jared's face and enough time had passed it was safe to remove.
The ENT doctor accessed Jared before I left. He wasn't sure removing the trach was the best idea so we agreed to down size it again and give him a speaking valve. He placed a consult for general surgery because Jared still had sutures in the base of the trach. General surgery came while I was home. He saw Jared coughing mucus up into his mouth and completely bypassing the trach. He said if Jared could do that he didn't need the trach and removed it.
When I saw Jared for the first time I was so excited. His trach and collar were gone and he look so much more comfortable.
I collected different objects for Jared, hoping one day things would just click for him, and that's exactly what happened, literally. One night Jared was restless, I gave him an ink pen to hold. The kind with the button on the end. A few seconds after put the pen in his hand he started clicking it over and over again as fast as he could. He flipped the pen though his fingers and clicked the button against his body. Spinning the pen around again he started trying to draw on his chest. It was like watching someone come back from the dead, I was amazed. I placed a notebook on Jared's bed and he began to write, I couldn't read it, but still, he wrote. I starred at him for the longest time, watching how natural his movements were.
From that point on Jared began to rapidly improve. Everyday he was doing something new and exciting.
With the trach gone I decided to give Jared showers every night. I'm still not sure why, but Jared began to make noises when he was in the shower.
Every single night I put Jared in the shower chair and gave him a long hot relaxing shower. I encouraged him to moan and make noises, I made noises too.
One night I accidentally splashed a little water in Jared's eye. I held my breath as I watched him reach up and wipe his eye!
The next night he scratched his ear. Jared began throwing balls and exploring his surroundings. he even managed to push himself a few inches in his wheelchair. We started thumb wrestling and doing little hand shakes.
I went shopping and bought all the little things I could think of. A spray bottle, tambourine, squeaky toys, and a lighter. Jared was able to use all the objects I showed him.
It was so exciting to see Jared improving, but there was a small battle in progress. The VA didn't want to pay to fly Jared to Virgina. They were trying to find other options, they also told me that they wouldn't send him unless it was medically necessary, and that their hospital couldn't provide the treatment, and that the facility in Virgina had to be the closest facility that offered the program.
Dr. G saved us again. He sent all the information along with a letter from him personally. In the letter he described the reasons why he wanted Jared there and how they could help him.
The social worker exhausted all other charities and programs, things were looking bad.
I told the social worker that Jared was going to go to Virgina, with or without their help. I called commercial air lines and they would fly him, but doctors
told me they wouldn't release him to fly on a commercial plane. I asked them if I could drive him there, NO! I also asked if we could leave AMA, another fat NO. I'm only Jared's wife, not his legal guardian, I can't do anything AMA.
I knew right then if they wouldn't send Jared to Virgina, I would kidnap him. I was going to sneak him out of the hospital, drive him to Virgina and drop him off at the VA. So what if they arrested me? I could see the headlines "Wife kidnaps comatose husband to seek medical help.", it was going to be a mess.
Thankfully the hospital agreed to transport Jared, no jail time for me. I guess when I started suggesting the unthinkable (placing a coma patient on a commercial flight), they realized I was serious.
Before we left for Virgina I wanted to make one last visit. At this point Jared had been in a coma for over two months and was finally showing signs of recovery. I dressed Jared, placed him in his wheel chair, gathered "objects" up, and wheeled him into the ICU of the trauma hospital. I pushed Jared up to the nurses station and asked them to page Dr. E.
Dr. E approached us a few minutes later with a look of amazement in his eyes. Just sitting in his chair without a trach and his eyes open he had surpassed Dr. E's original prognosis. I explained Jared's improvements, telling him about the functional object use, and that Jared could brush his own teeth. He watched Jared try to push his chair and reach out for the wall, a smile on his face the entire time.
He told me he wanted to know how this all turns out and gave me his email address. Dr. E said "I'm glad your taking him to Virgina, your dining he right thing. I'm so proud of you for fighting for him, keep pushing.".
We visited the 8th floor for a few minutes and left to pack up for Virginia.

Looking back.

I was so lost during my time at the trauma hospital. I had so many questions with few people to answer them. Most of the doctors involved in Jared's care were reluctant to give us hope at all. I can only guess that they were worried about giving us "false hope" in case things didn't work out.
It would have been nice if I could have found one person or family member that had experience with Severe Diffuse Axonal Injury. Someone that could have told me what they did regarding their loved one, and what the outcome was. I'm a rational person (most of the time) and I understand that every brain injury is different. One person may recover while another (with the same injury) does not. I just wanted someone to answer my questions that had experienced the long term effects of Jared's type of injury.
The neurosurgeons that we were dealing with in the beginning, had no idea what life is like after the initial trauma. That's not something they experience, they patch them up and send them on to the next doctor.
I researched the Internet constantly. I was looking for every detail that I could find about brain injury, DAI, and the symptoms Jared was suffering from. I researched trachs, peg tubes, left sided weakness, clinical trials, recovery stories, medicines, coma recovery, coma stimulation, and so many, many, more things about the human body.
I tried to tell the doctors that Jared could follow commands. When they couldn't get him to do it when they came in for rotation, they assumed I was just the hopeful, crazy, grieving wife. They tried to tell me he wasn't actually following commands, it was just coincidence. A reflex.
When Jared began to regress after the EVD drain was removed they didn't believe that either. Frustrated I gave up on the ICU doctors and thought I would have better chances of convincing the Physical medicine & Rehabilitation doctors. I didn't have much luck there either.
I researched treatments and coma stimulation. I wanted to try something, anything, to make Jared wake up. Most of the doctors were reluctant to do anything at all. This was a trauma hospital and they really weren't worried about helping him recover. I had to ask them or beg them to do simple things like taking the Foley catheter out and down sizing his trach.I was even told down sizing the trach would cause another regression.
Each morning the doctors made their rounds. Each morning they asked if I found a place to move Jared.
I couldn't find anything thing other than nursing homes for geriatric patients, most of those wouldn't accept him with a trach. Rehab programs wouldn't take him because he couldn't participate in rehab. I found ONE acute care hospital that would offer therapy, but they wouldn't accept his insurance. No one wanted Jared.
I finally found a PM&R doctor that was willing to help me. We talked about the things that I researched and she's the one who prescribed Ambien. She also gave me permission to get Jared out of the bed and into a wheelchair. We talked about stimulation and she was willing to let me try it.
I got Jared out of bed everyday. Soon he was wearing real clothes and going outside. I did everything I could think of to help stimulate him. When we went to the cafeteria I put things in his hands and asked him to hold them. I offered him things to eat, smell, touch, just to see if he would try. I liked going to the cafeteria with him, that's where we ran into all the staff that had been taking care of Jared in ICU. They could see that he was getting better, and I loved seeing their reactions.
I finally told the doctors to find a place that would help Jared with his brain injury. When they did I would be more than happy to move him, and NO NURSING HOMES!
Finally the PM&R doctor (the one that was trying to help) approached me about the VA. With all of our other options exhausted she told me about Dr. G.
Dr. G was at the hospital when Jared was injured. He was very interested in taking care of Jared but he moved to a VA hospital in Virginia for a fellowship program. Dr. G wanted to specialize in Jared's type of injuries. She said Dr. G had been following Jared's case since the beginning and they spoke regularly. I told her I was willing to do anything or go anywhere, if they would actually try to help Jared.
Dr. G arranged a 90 coma emergent program for Jared. They were going to move Jared to the local VA until a bed was available in Virgina.
When we left the trauma hospital Jared was following a few very simple commands with a lot of coaching. He could move his right hand more, and seemed to be more alert.
They day I rolled him out of the trauma hospital I was standing there talking to CNA I had become friends with. I was holding a water bottle and handed it to Jared. I told him "Hold this for me." and Jared reached up and grabbed the bottle from me. The girl was so shocked and excited she was speechless. I gave her a big smile and pushed Jared into the hallway without looking back.

ICU and the 8th floor. (some photos may be disturbing)

The trauma hospital allowed me to stay in Jared's room over night. The only time I was required to leave was during their ICU shift change from 6 to 8, am and pm.
Most of the staff members were great and allowed me to participate in Jared's care. Jared had so many people visit him while he was in ICU. I never knew so many people loved him.
ICU was such an emotional roller coaster, I can't remember a lot of the details.
I have some of the details written in emails and updates to friends. I'm going to post some of those to explain where we are today.

June 25, 2009

We are on day two. His brain has stopped bleeding, the fluid in the (EVD)drain is clear for now. He has a fever that they are able to control, fever is normal for brain injuries. He has some movement in his right side, they say it's purposeful. The left side has reflex movement called posturing. They say his is severely brain damaged and probably will be for the rest of his life. His left jaw and nose are broken. The right side of his face had several fractures. They will do nothing for any of that, none of it is displaced. They will wire the jaw when he has a better prognosis. He chipped a bone in his neck (c-4 fracture), I don't know what they will do with that. He had a few scrapes and such, but all the real damage is to his brain and face.
I'm hoping for the best and praying for miracles.

June 26, 2009

They slowed down the drain in his head this morning. They are going to see how much pressure builds, I think they are considering taking the drain out if the pressure does well.
I was asleep when the neurosurgeon came in so I'm hoping to talk to the day shift neurosurgeon before they kick me out.
I am hopeful that he will make a great recovery. They won't tell me what to expect really, but he's so strong, even now his body is so strong when he moves. I can barely hold him down for them to mess with his IV and stuff. Somehow I just know that things are going to be ok. I've been dealing with everything very well. I've only actually broken down and cried a few times. Seeing the tubes and watching them work on him doesn't bother me, I don't know why. I thought it would but it hasn't.

June 27, 2009

It's been a long day. I still have the computer, I can use this as well as cell phones here in the ICU. The staff here has been very cooperative and let me bend the rules, a lot.
To start my day off the general surgeon told me that Jared was brain dead. He told me that he absolutely would not survive, pretty much all that was left to do was pull the plug. He said that the neurosurgeon might not agree and that I would have to talk to him. He told me that we could run some test to see the levels of brain activity and determine what to do from there. He told this to the entire family, they are always with me when I talk to doctors.
We were all crushed. I asked to speak to the neurosurgeon. Of course he was going to be in surgery until 7 pm. We waited, and mourned, all day. I was absolutely sick all day. I requested to lay next to him in bed, they allowed it, so I spent all day laying in bed next to him crying. There was a steady stream of people in and out all day to see him. Some people I have never even met before (mostly military). It was the saddest thing I've ever dealt with, me laying in bed crying, and a room full of big tough soldiers crying. I bonded with each one of them. Each of his friends not just the soldiers. One of his Army friends placed a hand on me and Jared, he said the most beautiful prayer I've ever heard. It touched me so much. I can't even begin to describe the love, support, encouragement, and compassion I've seen today. Today was truly life changing.
We talked to the neurosurgeon tonight. He said Jared's body would probably live through this. He said that he thought Jared would even be able to breathe on his on eventually and that he could live machine free. He also said Jared could wake up from his coma one day. Mentally he didn't think Jared would ever recover. He said it's not likely that he would talk or have motor skills, or anything for that matter. He would be a body. He said to expect anything more would be reckless.
All we can do it wait. There isn't even an option to remove support and end things at this time. He still has enough brain function to support his organs and can't be considered brain dead. He doesn't even qualify for the testing. Not that I want to remove support, it's just not even an option.
Jared hasn't improved at all, his condition hasn't gotten worse either. His eyes won't even react to light, his pupils aren't even the same size (that's really really bad). There are so many details I don't even have the strength to type.

June 28, 2009

Not any real changes today. He has fluid in his right lung, they put a scope in his breathing tube, looked around, and took a sample of the fluid. Most likely it's something he aspirated. When they looked at the x-rays of the lungs for the fluid, they saw a air pocket between his left lung and heart. For now it will go away on it's on, but if it gets bigger they will have to put in a chest tube.
Things are getting pretty stressful, it's just dealing with everyone else that makes this so hard. Sometimes I want to scream. I feel like I'm in nurse training, I don't even have time to be the grieving wife. I'm continuously cleaning wounds, checking monitors, explaining medical terms and answering questions to family. I've been doing some physical therapy with Jared at night to keep his joints loose, and now I have to suck the backed up saliva out of his mouth with the sucker thing. Apparently since they took him off sedation he is producing more saliva. I had to MAKE the nurse put a cooling blanket on him today, His temp was close to 103 and Tylenol wasn't touching it. I tried cool wet towels but that didn't help. He's been on Tylenol and the blanket all day and he still has a temp. I had to prop up his feet with a blanket, he's getting drop foot and they are being slow about making his splints, I don't even think they wanted to make them because no one thinks he will ever use his feet again. Last night the nurse left Jared's drain (the one for the brain pressure) closed. They are supposed to leave it open so he doesn't build pressure, they have to check the closed pressure every hour and record the amount of cerebral spinal fluid. He tried to be discreet when another nurse called him out about it, but I still knew what was going on.
UGH! This is going to be a long night, I keep having to suck his mouth out every 5 minutes and he keeps biting his breathing tube and making the machine go off.

June 29, 2009

Things have been a little better. Family and friends have settled down, most have returned to their homes and jobs. Jared is showing slight signs of improvement. He hasn't been sedated for the last 2 days and nights. He is also starting to regain his corneal reflexes, basically he reacts when you poke him in the eye. His pupils are reacting to light, only slightly and very slow, but still it's better than nothing. His ICP (brain pressure) has been good. They are slowing his drain and trying to wean him from it. He is starting to develop pneumonia, hopefully that won't get too bad. He is being more active, he's moving his left side more.
Last night I was able to give him his complete bath. They let me wash his face and tend his wounds. They shaved him and changed his collar. They moved his IV on the left arm and took blood. Everything was going on at once, he was fighting so hard. His whole body was shivering and he was coughing and bucking around on the bed. It was just too much, I had to leave. I just couldn't watch it anymore. That was the first time I had to leave. Of all the things I have witnessed I just couldn't handle seeing him fight like that.
At some point during the night he moved around and unhooked the air from his breathing tube. The alarm went off and woke me up. I could here him gurgling and trying to cough. I didn't see the air was unhooked so I went to get the nurse and left him with NO AIR. I was just too out of it to notice. I can't believe I did that. The good thing is now that I look back, the noises I heard were him breathing on his own.
His feeding tube is in and he his tolerating the food. He should be having bowel movements soon. I tell the nurses I just can't wait until he has his first one, because he will be doing something new. Thank God for small victories.
Last night I left the hospital for the second time. We went to have dinner while the ICU was closed. I was worried sick. I even called his nurse to check on him while I was out. By the time I got back I thought I was going to pass out and never wake up. I wanted to crawl out of my skin. I don't know how I will ever be able to leave here

June 30, 2009

Your not going to believe this, I can hardly believe it myself, HE IS FOLLOWING COMMANDS! The Dr's haven't seen it yet but me, his mother, and his nurse are convinced. He will squeeze your hand when you ask. He will answer questions like "Squeeze my hand if you are in pain". He will also move his eyes when you ask him to blink (he can't really blink yet), he also pushes your finger with his toes when you ask him to. I'm trying not to get too exited about it yet. I realized he was listening to me when I was trying to work his joints. He kept trying to resist and when I told him not to he would stop. I casually mentioned that to the nurse so she asked him to follow some commands, he followed all her directions!
He has a team of neurosurgeons so there's never just one opinion. So far I'm happy with the lead neurosurgeon. He also has a specialist for his face and a general surgeon for his body. There is a respiratory team for his breathing and such.
He looks so good today. It's been a long time since I've been this happy. He also seems to be sleeping at times. Usually he just looks and feels the same all the time, but now it seems like he has times when he's awake and asleep.
If the Dr's agree that he is in fact following commands I don't know if they will consider him to be out of the coma. Apparently there are different levels of coma.
Also, his pupils are starting to even out. They were 4 and 2, now they are like 4 and 5.
They closed the brain drain a little. They are going to close it a little at a time until he can live with it completely closed. I don't know how long it will be until they remove it.

July 1, 2009

Today Jared has not been real active. I think maybe he was so relived he communicated with us that now he is able to relax and rest. He has followed a few commands several times today, he hasn't done it for the Dr's yet. He has to be active to be able to do it, I think he fades in and out of consciousness. He is blinking his eyes more. The doctors actually said his eyes are IMPROVING, that's the first time they have used that word since we have been here. They are very hesitant to say anything good.I know they do it to prepare us for the worst.
He had his first bowel movement today, I was so exited! I know it seems silly but at least now I know all that stuff still works.
I feel so much better.

July 2, 2009

They took his "brain drain" out. They closed the drain at 1pm yesterday and left it closed all day and night. They did the CT and said everything looked the same and they took the drain out. They even let me stay with him while they did it. They scheduled the trach and the feeding peg surgeries for Monday. I'm so exited, I'll be able to see his whole face!!
He hasn't been really active lately, that worries me a little. I keep telling myself that he just needs time to rest and heal. I'm sure when he's had time he will be very active again.
I think the Dr's are starting to believe that he really is following the commands. The nurses have started writing it in their charts. I keep explaining to them that he drifts in and out, I told them they need to access him when he is actually being active. He responds when he's already active. He also responds when he's "resting", it just takes him a little while to come around. Usually he starts responding right after the Dr's leave.
He is collecting fluid in his body, mostly his chest, neck, and arms. Today I noticed his right arm was huge. I told the nurse and she didn't want to do anything about it. They had a blood pressure cuff on his upper arm, and IV in the middle and a restraint on his wrist. I begged the nurse to move the BP cuff and the IV. She told me it wouldn't help, I told her it would make ME feel better though. Reluctantly she did it.I had to ask her if propping it up would help the swelling, then she propped his arm up. What would have happened if I hadn't been here? I shouldn't have to beg them to do their job. How are they supposed to draw blood and such if his arm is swollen like that??
I know that every little thing matters to me. Are these things really not that big of a deal? Am I one of those crazy family members who complain about every thing?

July 3, 2009

Things have been going well. His BP has been good. His eyes (pupils) are reacting as well as they once did. I think he may have built a little pressure on his brain after they removed the drain. I think they will improve eventually when his body adjusts. He has been moving his eyes more. In the past his eyes were just fixed half open. Now he closes them when he's resting and he opens them when he's active. He can also blink like a normal person when his eyes are open.
I'm convinced that he's waking up and that he knows who I am. This morning I was holding is hand, I tried to let go and he squeezed me tighter every time I tried to pull away. his eyes were open and the left one was focused on me. I told him I needed to get a chair and that I would be right back. I sat there with him squeezing my hand and told him how much me and the kids love him and miss him. I told him how much we needed him and that we would always be here taking care of him. He sat there looking at me and blinking, then a big fat tear rolled out of his eye, down his nose and onto the bed. I wiped the tear away and told him I knew he was still with me.
I think he was having a emotional response to what I was saying. He tears sometimes but not like that. I feel so much that he's still in there loving me. I can just tell, I'm positive. I guess it's just the way he reacts to me and no one else.
I thought about it today, even if he doesn't improve, I can be happy with this. My hopes and dreams were that I wanted to know he could be happy and receive pleasure and comfort. I wanted him to be able to live without machines, and the Dr's think he will.
I'm missing my kids. It's killing me to be away. Tyson is standing and taking a few steps. He's learned how to climb out of the playpen and he's called everyone momma but me. I missed it all. Catlin is so worried. She's been so sweet to me. I miss seeing the everyday things. Hopefully I will be able to leave here for a while and see them. I don't want to leave until after Jared's surgery Monday.

July 5, 2009

Yesterday wasn't so good. When I came back from dinner they told me Jared had CDIFF. He got it from the antibiotics they have been giving him. They drugs killed the good bacteria in his bowels. Now he has this bacteria in his stool and it is infectious. I can't stay over night with him until it's gone. I have to wear gloves and a plastic gown when I'm in his room. I've compared it to getting a yeast infection when a woman takes antibiotics, it works the same way.
Last night was my first night away from him. I was so hurt I couldn't be there with him. This could go on for weeks. I've reasoned with myself. If I have my children come here, I can spend my nights with them and my days with Jared until he gets over it.
Jared hasn't really been active. He continues to look at me, and I still feel as if he knows who I am. I think with all that's going on in his body he's not strong enough to do very much or even stay awake very long.
I hate being away from him, I start to have doubts and worries. I find so much comfort just being near him.
Monday can't get here fast enough. I can't wait to see his face. I often wonder if he will move his mouth or be vocal in anyway. I can't wait to touch his face and kiss his mouth. I've learned to appreciate and celebrate the smallest things.
I'm alone with my kids now. This is the first time I've had them all to myself since the accident. Tyson has grown so much in the last 11 days. He was more exited to see my mother than me. Soon he won't be a baby anymore. I have yet to hear him say momma. He has two more teeth as well. Catlin did allow me to hold her for a while, that's not something we usually do.

July 8, 2009

I wish I had a better update with happy stories, but I really don't.
Jared is no longer following commands. He still responds to pain, but he is hardly active anymore. He rarely puts up a fight when they do anything to him.
I did some research Sunday night before his surgery on Monday. From what I found things did not look good at all. I couldn't find anything about anyone actually recovering from Jared's level of injury. I did find something that said 90% of people who have severe DAI (Diffused Axonal Injury) usually enter into a prolonged vegetative state. Recovery (from the vegetative state) means they gained no real function but eventually became aware of their situation, then slowly watched themselves deteriorate and eventually die feeling every pain. Recovery is extremely rare and the life expectancy of these people is only 2 to 5 years before they die of pneumonia or secondary infection.
Up until now every single Dr had told me his condition now is what he will be for the rest of his life. They told me to expect more would be reckless. With the prognosis the Dr's had given me, and my research, I decided to delay Jared's surgery. His Dr agreed to run further tests and to consult with a neurologist before we make any more decisions.
After the MRI and an EEG the neurologist met with us. He said that Jared still had a "fair" chance at a meaningful recovery. He said the frontal lobe on the right side was damaged the most. He said that was the part of the brain that controlled emotions, some personality, problem solving skills, ect. He said the best case scenario would be that he learned to walk and talk again. That he would be able to function and have a happy life. He would be able to have meaningful relation ships and practice basic hygiene. He also said that he would be able to be free of the feeding tube and respirator. He said that Jared would never be normal, he would never be able to work or drive. He said that Jared would still have his long term memory but he would forever have short term memory loss. He also said he wouldn't be able to control his emotions and that he would be very impulsive and unpredictable.
The worst case senario would be that he never improves at all. He said the chance of him not improving at all is about 50%, that is if he had to give an actual number.
Jared could be either of those or anywhere in between. The neurologist very reluctant to give up on Jared at all. He suggested that we continue to aggressively treat his condition and encourage his recovery.He also told us that his injury wasn't as bad as others had originally thought. He said Jared's secondary injury was minimal, and that the bleeds and swelling are finished.
I guess for now we will continue. I'm still have hope and never really lost it, I just didn't want to continue to put him and us through this if there was 0 chance of any recovery. That would have been pointless and selfish.
Jared should make the biggest part of his recovery in the next 3 months. If he never improves I still have the option to withdrawal support.
I can't imagine how hard it would be to ever do that. I would either have to watch him suffocate or starve to death. If I can't bring myself to make that choice the only option is to watch him slowly die over a number of years while watching him fight infections, never knowing if he actually knows what is happening to him.
I'm so lost and heart broken. I don't know what choices are the best at this point. I hate myself for even thinking of ending his life, but sometimes the thought having him survie with no recovery is more than I can bare.
I know that I can love him and take care of him if he has some kind of recovery, even a small one. I know that we can live happy healthy lives together. I don't mind taking care of him forever, or years spent on recovery.
I love him and I always will. This is just so hard.

July 9, 2009

Jared had his surgery today. First they did his trach and feeding peg. Then they wired his mouth shut so his broken jaw will heal properly. Last they put in a central line (I'm not sure if that's what it's really called). Before the surgery (and the last few days) they had a hard time getting blood out of him or finding places to put IVs. They could hardly get him to bleed enough for the blood sugar tests. I asked them to put the line in his neck for a while so they wouldn't have to keep sticking him as much. Before the surgery they had to stick a 5 or 6 inch needle in his groin to get blood, that's all it took for me to want the central line.
After surgery he looked and acted better than I expected. His temp dropped down to 93.2 after the surgery so they had to warm him up. I finally got to kiss him directly on the mouth, it felt wonderful to feel those warm lips on mine. He was so cute when I saw him, he was covered with blankets, he even had one on his head. I was finally able to see his whole face, his lips were so cute and pouty. He was more aware than I expected him to be. He spent most of the afternoon and evening with his eyes open looking at us. I noticed today he was trying to track us with his eyes. Depending on which side I was at he would slowly bring his eyes to focus on me. He seemed to be so much more comfortable. I think it's easier for him to breathe too. I noticed that he breathes over the vent more now (that is what they want to see) and he also seemed to have more productive coughs. I also heard him swallow one time. Those are all good signs that he will able to breathe on his own and protect his own airway.
I felt so much more hopeful after the surgery. I hate that I delayed it but I'm glad I did, they were able to go ahead and fix his jaw instead of having to schedule a whole surgery just for that. The less they have to give him anesthesia the better.
The CDIFF seems to be getting better as well as the pneumonia. I think he will go to a step down unit as soon as his breathing improves.
I've been playing his music, talking, and laughing with him. I also bought a book for him today by his favorite author. I guess I will start reading that to him tomorrow.
At some point tomorrow his mother is making me leave and go home. She wants me to spend the entire weekend. I doubt I will. I do need to go home though, I have to get some paper work done and get my driver's licence renewed. I dread going home. Every day I am reminded of Jared and things we did, I can't imagine how painful it will be to go home and see what remians of our life. Catlin misses home and wants to spend some time there. Tyson's first birthday is coming on the 21st, I have yet to make any plans.

July 12, 2009

Jared has been off the respirator and breathing on his own for the last two days! They told me that his muscles may get tired because he hasn't used them in so long, they said they may have to put him back on the respirator to let him rest. He hasn't shown any signs that his body is wearing out and they have yet to put him back on.
He is now able to live machine free, that's a huge step for us. The rest of his recovery is up to him, we just have to wait and give him time to show us what he can do.
He has tested negative on his CDIFF twice. We still have to follow the contact precautions until they clean his room. Hopefully by Monday I will be able to stay with him at night.
He looks so much better. Last night I was able to shave his entire face. It takes me so long to shave him, I guess I'll get better and faster in time. I didn't cut him up like the nurses do, I guess that's what really matters. I used his shaving cream so he smelled so good when I was finished. I pressed my lips to his cheek and closed my eyes and took several deep breaths taking in the smell. For a moment it felt like a normal night, me kissing him goodnight after he shaved. I almost lost all self control and climbed in his bed.
I did go home Friday. That was such a horrible experience. I was nervous all day knowing that I was going to have to leave that day. This was also the day the took him off the respirator, I was so afraid something I was going to happen while I was gone. His dad arranged to drive up and sit with him all weekend while I was gone, he said he would sit here the entire time until they kicked him out at night.
When I did get home I knew instantly that something was wrong. Flies were swarming my font door, I just stood there for a moment really confused. When I opened the door the smell almost knocked me over, it smelled like something had died. I knew that the dishes were still dirty but I didn't think it would be THAT bad. I walked into the kitchen and realized that when requested my fridge be cleaned out incase my electricity was turned off, they took everything out and put it in the trash can, stacked all the dishes on the counter and in a chair in the kitchen.... and just left it. All the food had been sitting in the house rotting for weeks now. I have never seen so many maggots in my life. They were everywhere. They had even fallen off the chair and counter into piles on the floor. I took everything I could outside to wash with the water hose, I dripped maggots all over the place as I walked out with the dishes. My cable and Internet were cut off and my dryer wouldn't work.
Jared's mother came and finished the kitchen for me, I left and went and looked at the place Jared wrecked. Then I went and looked at his bike. When I went home I sat down and called the man he hit. Actually he lives on the same street I do but at the other end. He was a frail little old man. I got tickled because he and his wife answered different phones at the same time, we all said hello about a thousand times. It was a good conversation and they were so relived and happy that I called. They wanted to help in anyway they could and they wanted to keep up with his progress. I'm glad I made that call.
I did every painful thing I could think of. I'm ready to move on, I don't want the pain of seeing something for the first time down the road. Last I went to my sister's and saw the kids. It was bitter sweet and I hung out with them until 3 am.
My sister confessed that they had gone to the place Jared wrecked and took pictures. She said his blood was still was still on the road and they had taken pictures of it. She said when they were finished they cleaned the blood off the road. I looked at the pictures, I'm glad she had them so I could see exactly where he landed, I've slowly been able to but the pieces together and have an idea of what actually happened.
When I left the kids at 3 am I went home and repacked everything I needed and drove back to Little Rock. I feel out of place anywhere but with Jared. I couldn't stand to be away from him. I hurt so bad to see the reality of my life back at home. I got here about 7 am, the ICU is closed from 6 to 8 so I slept in my car in the parking lot for an hour before I could see him. I had a wonderful dream about Jared waking up, I was so disappointed that it wasn't real. As soon as I was able to see and touch him again I physicaly and mentally felt so much better. Then Jared's mother called the nurse and busted me sneaking back to the Hospital. I slept the rest of the morning beside his bed in a chair wearing gloves and a plastic gown. The nurse felt sorry for me and brought me some blankets.

July 14, 2009

We are out of ICU!!! Wooohoooo! We are now on the 8th floor, it's like a step down unit but the whole floor is dedicated to nuro patients. He goes to a "nursing home" from here. If he starts to wake up and can follow commands they will send him to a rehab instead. I'm trying to figure out how he can live with us at home. I may sign up for a CNA class to get more comfortable. I also have to learn about the care he will need and find a place we can all live. Plus I have to find the equipment he will require. I know it's going to be a lot of work, but I will never stop wanting him to be at home with us. It scares me to think of him being neglected and ignored in a nursing home full of old people.
I guess having him at home will be like "Weekend at Burnie's" in a way. He probably won't dance every time he hears music though.
Physically he is doing great. He even managed to hock a loogie on a nurse today. It was pretty funny. I can stay the night with him again, I don't even have to wear gloves or a plastic gown anymore.
I'm trying my best to enjoy spending my nights with him, I won't be able to anymore if he goes into a long term care facility.
His mom is a emotional wreck right now. She's at home now. I asked her to look into some places for Jared to go when he's released from here, she can't do it right now. I guess trying to find a nursing home for a 25 year old son was too much for her.
I've been holding up fine with the exception of going home. I still have a comfort and peace about the whole situation. I still feel like everything is going to be just fine, even though the Dr's have scared me a few times. I don't know yet if he will be this way forever, or if he will eventually recover, or he will die in the next few years. I do KNOW everything will be ok. We will be happy and we will appreciate and cherish the time we do still have with Jared. I will not be tortured by this tragedy. I will not be sad, I refuse to be depressed. There isn't a person to blame or to be angry with. Shit happens, I'm playing the cards I was dealt.

July 17, 2009

Another day on the 8th floor. I actually like it here, these people LISTEN to me.
Last night I couldn't sleep. I cried my eyes out and begged Jared to wake up. The thought of him going into a nursinghome sickens me to no end. I'm terrified to send him to another state for rehab. I want to throw him in the Honda and run away. I want have a secret life with him, no more phone calls and updates. No more Dr's, no more mean nurses, just us. We could spend the rest of our lives laying in bed holding each other, best of all he wouldn't even complain.
But I also know that thought process (this is the part where I delete a whole paragraph, now I will start rewriting the next few sentences) is completely absurd. I pulled myself together and spent the rest of the night doing research. Finally the doctors made their rotation. They always have handful of interns with them. I was loaded and ready to fire about a million questions (thank you google).First I asked when he could be weaned down from his trach and oxygen. The Dr told me that he is wasn't in a hurry to wean him because his mouth was going to be wired shut. He said we could get him into a smaller trach size and wean him off the oxygen. My next question was about nuro storming, he told me that he wasn't the Dr for those questions. He said he would ask the other Dr to come in and talk to me.
A few hours later she did. I asked why she thought he had stopped following commands. I gave her a recap of his behavior and she said that she would try and figure out why by looking at the previous CT and MRIs and comparing them. She said up until this point no one had even questioned it. We decided that he could have regressed because of increased ICP, nuro storming, or weakness due to infection. Once we get an idea of what caused it we could try and fix it. I told her that I was open to trying new treatments, I told her about the ones I had been researching. We agreed to try Ambien, it's been linked to waking people after years of being comatose. She said that she just did a trail with Ambienon a young man that had been in a coma for 2 months, with good results. She said it hasn't really been documented in cases as early as Jared's. Who would have thought a sleeping pill could wake up a coma patient.
Later on I was able to cut Jared's hair. He looks so much better. They also completely weaned him off oxygen.
I spent most of the day messing around with Jared trying to keep him "awake". He had his eyes open for most of the day. We are trying to get him on a "sleeping" pattern. This honestly sounds ridiculous considering he is in a coma.
He seemed very aware today. We (I) talked and he watched cartoons. I read to him and worked some of his muscles and gave him a massage. I'm trying to think of things I can do with him to stimulate him. In my research last night I realized he couldn't taste or smell with the trach, stimulating those senses are out.
He is also slowly becoming more active. He moves his hands a little more and occasionally wiggles his toes. He gets mad and irritated, he makes mean faces at us when we mess with him. Last night it looked like he was trying to open his mouth to object to me shaving him. His jaw is wired shut so he was only able to snarl his lips up and bare his teeth. It was pretty funny, I eventually had to give up because he wouldn't hold his face still.
Ok, that was today. I'm tired and I'm trying to get on Jared's sleep schedule. Maye I'll have some good news tomorrow after our first night on Ambien.

July 18, 2009

We got Jared out of the bed today and let him sit in a chair. They let him sit in the chair for an hour, I played a movie on the laptop and set it in his lap. For the last 2 weeks I've tried so hard to get him to squeeze my hand, move his arms, or wiggle his toes. Nothing. Maybe a few random arm movements or toe twitches but that's it. As soon as I played the movie for him he started moving his fingers. Took his hand splints off just to see what he was trying to do. I still can't believe it but he started moving round and squeezing my hands. He even pinched me. When I tried to pull my hand away he would squeeze tighter. The whole time he sat there watching the movie he was active. After his hour was up the moved him back into bed. He closed his eyes right away and went to sleep like that was the most exhausting thing he's ever done in his entire life.
Today when I woke up Jared was attempting to yawn and stretch his arms. I felt so bad for him so I pulled his arms and rubbed them in an attempt to help him stretch. I can't put into words how excited I am to see him being more active.
They tried the Ambien last night, finally. It didn't seem like it affected him at all. I think maybe he rested a little better. He was more active today than he was yesterday so maybe it helped him rest more and have more energy. Sometimes it takes a few doses to work at all. We will see.
Ok, I'm going to take another nap. Jared gets to sit in the chair again in a few more hours.

July 23, 2009

The last few days haven't been great at all. I'm having a very hard time finding a place for Jared to be moved to. The hospital is pushing me to move him, they wanted him out of here last week or something. Other than nursing homes no one will accept him. The rehab hospitals don't want him because he can't follow commands. The long term acute care hospital that's close won't accept him because of his insurance, they mightable to give him a scholarship bed in a month or so. I'm currently trying to get the VA to accept him into their hospital in Virginia. I don't even know if he is eligible for those kinds of VA benefits.
There aren't any places exept nursing homes for coma patients to go. I don't want him to go to a nursing home and just lay in a bed for days on end. He NEEDS someone to work with him, stimulate him, try new procedures, try new medicines, maybe even do some clinical trials. But no, there aren't places for people like Jared, they want coma patients that are more aware and can follow commands. No one is willing to try to get him that point.
I'm so frustrated. I know he can recover, I see it in him all the time. He knows what's going on. He's completely aware of his environment, he may not understand it yet, but he's aware.
Basically the medical community has giving up on him, that are done. I'm having to beg them to do the things that they should be doing anyway. His mother had a fit up here the other night, she wound up taking his neck brace off and throwing it in the floor. I don't blame her at all, the nurse was basically refusing to clean him up, he had dried mucus all around his trach.
Jared is doing well. I think he may be starting to follow some commands. It seems like he's trying very hard, I just think his wires are crossed a bit and he can't get the message through yet. I had then take his catheter out. Now he has a condom catheter on, it seems more comfortable. I also had them unwire his mouth and replace them with rubber bands. We discovered that he has thrush in his mouth today, it looks horrible. I imagine it hurts pretty bad. He is still very interested in watching movies, he always becomes more active while he watches them. He keeps his eyes open and focused until the movies stops, then he passes out like it's the most exhausting thing he's ever done.
Ty's first birthday was Tuesday. We had a party for him Sunday. It was an ok party, nothing big. I brought the kids back to the hospital with me Tuesday. Catlin was exited to see Jared, Tyson just wanted to pull on all the stuff attached to him. For the first time our family was reunited, I can't wait until we call all be together again. Jared's mother took the kids home with her, my siter inlaw and brother inlaw will be taking care of them until I can.

July 26, 2009

Things are a little better around here. I'm still waiting to see if Jared can go to the VA hospital in Virgina, keep your fingers crossed.
Jared has been doing well, really well. I talked the PM&R Dr into letting me put Jared in a wheel chair and pushing him around. For the last three days he has been out of bed cruising the hospital with me! The first day (Thursday) I scared Jared's nurse. The nurse got Jared all set up in the wheel chair and we took off, at the first corner I bumped into Jared's aunt Pam. She and her husband walked with us to the window so Jared could look out. After a few minutes I asked if she would mind sitting with Jared so I could run back and grab my camera, she said she would. As I walked back to Jared's room the nurse gave me a confused look and shrugged his shoulders, before he could ask I told him "Jared said the wanted to hang out by the window for a while so I left him there". The nurse about had a stroke as he hopped up to run after Jared, then I told him the truth. I don't think he thought it was funny. This was the first day Jared was able to go outside.
Day 2 (Friday) I couldn't find Jared's nurse when I was ready to take him out. I found 2 nurse aids that were willing to move him with me and we snuck out. The nurse looked very relived to see us when we returned a few hours later, I guess it's scary when coma patients disappear. I can't say that he was happy about the attempt to feed Jared ice cream. Oh, and he also shot a loogie all the way across the hall and made my mom gag, she has a thing about mucus.
Day 3 (Saturday) The nurse helped me get Jared dressed in his OWN CLOTHES! He got to wear shorts, a shirt, socks, and shoes. It was a little tricky but I was so happy to see him dressed. We went to the cafeteria so I could eat, then we went all over the hospital. I even took him outside and took his shoes off so he could feel the grass on his feet while he stared at the clouds. It was hot but I know it felt good to feel the sun on his face. Jared is so active when he's out rolling around, he refuses to lean his head back onto the pillow, he wants to hold his head up so he can see everything. He's not great at holding his head up yet but at least he's trying! He also follows a few commands, again he's not great but he's tying. I'm going to work on some new stuff tomorrow, like holding and letting go of a ball.
I've been very happy and hopful lately, well with the exeption of the insurance/ placement problems. Everyday Jared gives me a little more home and a few more laughs. I don't mind taking care of him at all, I just wish I could be at home with my kids while doing it. I could really be happy if we were all together.
If Jared moves to the VA in Virgina I will not move there. I think I will visit as much as I can, but my main goal will me getting our house, finances, and routine ready for his return. I think that's the best thing I can do for us.
July 29, 2009

Things are actually going well.
I did want to do the CNA thing, but unless it's required I think it's a waste of time. I've learned so much from being here. Most of the time I tell the nurses and CNA's what I want done and they do it. I have all the confidence that I can properly take care of him. The respiratory therapist asked me today if I had a background or experience in respiratory, I guess it sounds like I know what I'm talking about. I swear you can learn about amything on the Internet.
Today they finally downsized Jared's trach. I've been fighting with the Drs for the last week to get them to do it. I guess yesterday I gave the Dr enough greif the decided to agree with me. The poor kid was stuttering when he left here, he said he would ask his boss. An hour later the boss showed up and said he would do it. From the moment they put in the smaller trach Jared has done unbelievably well. They haven't had to suction him one time and he doesn't cough near as much. The congestion in his chest is almost completely gone. I really wanted to scream "I told you so" at Dr. Kid this morning.
The social worker came by yesterday, the VA in Virginia has agreed to accept Jared for 90 days of treatment. Now the problem is getting him there, they want to medevac him there. That costs about 20k one way, they are trying to get the VA to cover the cost. If the VA can't pay for it I sure can't, usually they want you to pay for it upfront. I will have to explore other options if that doesn't work out.
Hopefully he can recover to the point of following commands by the time we leave Virginia. If that happends I can reapply to the place in Georgia for additional rehab. If not then the VA here in Little Rock has agreed to take him, I will allow him to stay there until I can get our house ready.
Jared also qualifies for VA disability, I don't know how much it will pay but hopefully it will keep the lights and water on.
Everday he seems to be a little bit more aware. I think we are going to see great things very soon.

The day our lives changed forever.

June 24th 2009- My husband kissed me goodbye and told me he loved me. He walked out the door at 6:30am, I rolled over and went back to sleep, never knowing how much my life was about to change.
Two hours later I woke up to someone banging on my window. I peeked out and saw one of Jared's work friends. I smiled and headed to the door thinking "What has Jared gotten into now." remembering the oil soaked goose he caught at work a few weeks earlier.
I opened the door Standing there with a very serious face his friend said "We have to go to the hospital, Jared had a wreck on his motorcycle."... "It's bad." I was stunned. Jared left for work almost two hours ago, why was he on his bike? Then it hit me... he had the accident on the way to work. I told his friend I needed to get the kids dressed and scrambled around looking for clothes and waking the kids up. The whole time I'm thinking to myself "Why didn't he call me?" and "Why didn't he tell someone to call me?". I changed a diaper and left Jared's friend to dress the baby. I kept asking questions, "What happened?" and "Where did he wreck?". The only thing he could tell me was that Jared had a wreck on his way to work and Jared needed family at the hospital.
At some point I realized that Jared didn't call me because he couldn't and that whatever happened was so bad he couldn't give anyone instructions to call me.
I shook as I drove the short distance to the hospital. When I walked into the emergency room my cell phone rang. It was a woman from the police department telling me that Jared had been in an accident and that he was being air lifted to another hospital.
I asked a passing nurse where my husband was and told her his name. She told me "He's on the helicopter! You have to go out there!" and pointed out the door.
I knew exactly where the helicopter was, I had looked at the landing pad many times before wondering about the people who had been loaded into the small helicopters and flown to bigger hospitals.
I ran to the fenced in area and up to the open door of the helicopter. I shook so hard, I couldn't breathe. I remember the flight nurse handing me his wedding ring. I started crying as I stood there in shock starring at my husband. His head was so swollen, his face was bruised, he had deep open cuts on his forehead and chin. He was strapped to a board with a collar around his neck and his head was strapped down squishing it between two pads. He had a tube in his throat breathing for him, blood trickling from his mouth. My worst nightmare come true.
I remember the pilot telling me in such a calm voice "He has a head injury, I have him sedated and he can't talk to you. We're flying him to Little Rock, give me your cell phone number and we will call you when we land. You need to go to Little Rock." I asked him "I can't go with him?". The pilot kindly replied "No. You can't fly with him, you need to find someone to drive you there."
Taking a few deep breaths I asked "Can I kiss him?" The pilot gently grabbed my shoulders and laughed a bit and said "Of course, you can do whatever you want.".
I leaned into the helicopter and kissed him on the corner of his mouth three times. As I pulled away I saw the flight nurse lift her fingers to her mouth, trying to find the words to tell Jared's blood was on my lips.
I knew he needed help... and fast. I turned and walked back to the emergency room. Several nurses were standing there waiting for me. One nurse sat my daughter in a chair and talked to her. Another nurse was talking to Jared's friend as he held my son. As I walked up, a nurse handed me a white plastic bag and asked me for my cell phone. She put a sticker on the back of the phone and told me it had all of Jared's information on it, she also wrote the phone number of the hospital Jared was flying to and handed me the the phone. She explained which hospital I needed to go to. I called Jared's parents and broke the news. I called my mother and asked her to make arrangements for my children and told her to call everyone else.
Jared's friend offered to drive me to Little Rock. We left the hospital and I went to Jared's older brother's house. I told him what had happened and asked him to keep the kids until someone else could get them. I went home and packed a small bag and waited for Jared's friend to pick me up. While I waited I remembered the white plastic bag. I opened it and discovered Jared's belongings. His clothes, wallet, and phone were in the bag. I starred at them until I had to leave.
We drove for what seemed like forever.
I received a text message from the pilot telling me that Jared was stable with good vital signs and a estimated time of arrival.
A little later my phone rang, it was Jared's helicopter pilot. He told me that they had arrived and Jared was in trauma room two. His vitals were good and that the doctors were taking care of him. He wished us well and asked if I would update him on Jared's condition.
We finally arrived at the second hospital. I rushed into the emergency room desperate to see Jared. I had to sit at the desk and give them our information before they would allow me to go back. I remember walking down a hallway, straight towards trauma 2. The curtains were open and I could see Jared laying there with his arms stretched out to each side. There was a drape over his face, and doctors and nurses gathered around his head behind the drape. The nurse guided me past trauma two into a family room. I was told the doctor would be in to talk to me in a few minutes. I waited while our families raced to get to the hospital all of us only knowing Jared had a head injury.
After another small eternity Dr. E came in. He explained that Jared had a closed head injury called Diffused Axonal Injury. He explained the injury was caused by the sudden stop when Jared crashed. The brain floats in cerebral spinal fluid, when he hit the other vehicle his brain shifted sheering the axons around his brain. His brain smashed into the front of his skull causing the frontal lobes to bruise and hemorrhage. He explained that there was a bone in the center of the skull and Jared's brain had pushed into that as well, causing more bleeding and bruising. Finally he explained how Jared's brain twisted, damaging the brain stem on one side. I was told the next few weeks were critical and Jared's injury was potentially fatal. He told me that Jared would suffer some left sided weakness form the brain stem damage. I asked as many questions that I could think of, sobbing the entire time.
When Dr. E left, I went out and asked where the restroom was. A nurse escorted me to the bathroom as I tried to calm myself down.
When I regained some self control I walked back to trauma two. The curtain was closed now. I peeked into the curtain, aching to see Jared.
A doctor was standing over Jared, with his face draped again. The nurse rushed over, her eyes telling me to leave. "I know what your doing in there, I can handle it." .... "I just want to see him." She looked over her shoulder for approval from the doctor, he nodded, and she stepped to the side allowing me to enter.
I walked in and asked if I could hold his hand, again the Doctor nodded. A nurse came in with a chair for me to sit in. I sat there kissing the back of his hand and watching the doctor suture the cuts on Jared's face.
Jared fought so hard with that right hand. He squeezed me and tried to pull his hand up to his face. It took everything I had to hold him down, mentally and physically.
When the doctor was finished they removed the drapes. I sat there for the longest time accessing each injury. I read the dry erase board with all the details about Jared's suspected injuries. I saw the drain that had been placed in Jared's skull and all the freshly sutured wounds.
At this point the details are foggy. I remember the nurses buzzing around and hearing "The Dad is here.". I slowly began to recognise voices in the hall, I knew Jared's family had arrived. I had asked the Doctors to come back and speak to the family and asked that the nurses clean Jared up as much as they could. I was horrified by all the dried blood and wanted to spare the others from that experience.
Family members slowly came in, crying, and taking turns holding his hands. After a while Jared was wheeled to ICU, escorted by his entire family.